Not So Nifty Fifty

I cannot recall a time when I was this upset with myself. I’m not a doctor, but I feel my background should have allowed me to piece together the clues and help come up with a differential diagnosis much earlier. The perfect opportunity to participate in my healthcare by joining in the discussion and raising the right questions.

Lorie and I made a trip to Memorial Sloan-Kettering Cancer Center’s (MSKCCs) urgent care center last Tuesday (11/6/18). This was due to a fever and breathing difficulty both after going up/down stairs and following coughing episodes. Consider what was known at the time:

X-ray at urgent care suggesting pneumonia

Shortness of breath

Non-productive cough

Low-grade fever

History of radiation therapy to lungs in late July/early August

Pneumonia is a bacterial infection that inflames the air sacs in one or both lungs, but a subsequent CT scan and blood work didn’t confirm. Nonetheless, to be safe and in the absence of any other condition, I was prescribed one week’s worth of the broad spectrum antibiotic levofloxacin (Levaquin®) and instructed to follow-up with my oncologist.

Figure 1: Still untouched birthday ice cream cake

During the following week, all of the symptoms persisted. Between the breathing issues and fever, I didn’t feel like doing much other than resting on the couch all day and writing. Thankfully, I did manage to rally for an early birthday barbeque celebration this past Sunday. Then again, perhaps I jinxed myself by celebrating and posting early! Right, @23aloha? 😉

Aside from the aforementioned, recall that I’ve been suffering from back pain due to the progression of cancer to the spine. In early October, I met with a neurosurgeon at MSKCC in advance of receiving targeted radiation to two areas of my spine. To help prevent or minimize the pain flare that is common following radiation treatment to the skeleton, the neurosurgeon prescribed a steroid (dexamethasone).

Among other side effects, patients who are on steroids for three-weeks or longer are more susceptible to infections than are healthy individuals per the product prescribing information. After finishing radiation treatment to my spine on October 18th, I inquired with my health care team at MSKCC and began gradually reducing my dexamethasone dose to zero beginning on November 1st and finishing on November 6th (hint: day of my trip to urgent care, didn’t seem relevant at the time).

As referenced in my prior post, I’m not a big “birthday” person, but I was looking forward to celebrating my 50th milestone this past Monday. I hoped that the antibiotic would work and I’d be feeling somewhat better by then. No such luck. In general, I felt worse that day, and by the evening my temperature jumped to 101.9 Fahrenheit. No restaurant celebration or interest in my favorite ice cream cake (Figure 1). I took two acetaminophen, which brought the temperature down, and made an appointment the next afternoon to see my oncologist, Dr. David Pfister, and Nicole Leonhart, ANP, RN.

Of course, it wouldn’t be a commute between home and NYC without experiencing some significant delay. This time, a tugboat struck the Portal Bridge and we were held for close to an hour as the bridge was inspected for safety. We arrived at our appointment an hour late, but MSKCC was very accommodating.

After reviewing a new chest x-ray, my medical team offered a differential diagnosis of radiation pneumonitis based on empirical evidence. As soon as I heard the words, it made perfect sense. How could I have missed that! I knew radiation pneumonitis was a potential risk.

Sure enough, the suspicious areas on my chest x-ray correlated almost exactly with the areas targeted with SBRT over the summer. The sudden appearance of symptoms corresponding with tapering of the prior steroid dexamethasone also provided an important clue. It is likely the steroid meant to address potential bone pain flare issues was also treating the radiation pneumonitis. When I stopped the dexamethasone, the radiation pneumonitis was left untreated and suddenly became symptomatic. Ta-da!

While it wasn’t a perfect birthday in the traditional sense (whatever that even means), I prefer to focus on the fact that Lorie, Rosie, and Megan (and the zoo!) were with me on this 50th milestone, and that the recent symptoms weren’t due to further cancer progression (my initial concern) but rather a manageable radiation treatment side effect. Honestly, that is the best gift I could have received.

I would be remiss if I didn’t also acknowledge how important all of the happy birthday calls, texts, gifts, and social media posts were to me. It is one thing to hear from family and friends, but some messages from people I’ve never met in person were also truly lovely and brought a smile to my face. I do read EVERY post! So, to everyone who took time out of their day to acknowledge my birthday—thank you from the bottom of my heart!

8 thoughts on “Not So Nifty Fifty”

Do not bother feeling upset with yourself about this. Things happen, and you are dealing with the cancer about as well as anyone could. Good to learn about this condition though. Had not heard of it before. In any case, continue to live each day as fully as possible and keep up the great work.

I learn from every post you make. What you are doing is great contribution to those of us who may face the same issues you are. Enjoy your Birthday – you deserve it especially now that you know this incident is not as bad it orginally seemed. Save me a piece of ice cream cake!

I never thought I would be reading a blog by a gentleman who has invited complete strangers into his life as he reveals the ups and downs of his on going battle against cancer. Well guess what. After my husbands second surgery for tongue cancer I spend a lot of time on my computer researching this horrible disease and in particular head and neck cancer. I found your book while surfing the internet and that it was about the cancer my husband has. Like your family, we are in this together. I would like to ask you a question. Do you know anything about cancer cells in the veins. I do know that until recently there was not too much known. Hope you have a peaceful no rides into NYC Thanksgiving.

Kathy – Thank you for the note and very kind words. Sorry to hear that your husband also has head and neck cancer. Not sure what you’re looking for, but “cancer cells can pass into the pulmonary vein through lung capillaries and through direct extension” and lead to cancer progression (Dudek R. W., Louis T. M. High-Yield Gross Anatomy. 5th. London, UK: Lippincott Williams & Wilkins; 2014.)

Hindsight is always 20/20. But we can’t live in regret of anything. It adds unneeded stress, which I’m convinced that cancer loves. I, too, am dealing with residual effects of radiation. I have anal/rectal cancer (also presenting in two pelvic lymph nodes). I had 6 weeks of radiation (54 grays) and chemo: cisplatin & 5FU (24/7 pump). Although targeted as best as possible, the residual damage is painful and challenging (bathroom issues). I can’t imagine radiation damage moving around my body. You have been a source of inspiration to me and I pray for you every day. I love seeing your pet pics/videos. I lost my lab a year ago. He would have been right by my side just like your furry friends. I wish you a very happy Thanksgiving. (Scarlet on Twitter)

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About this Blog

Welcome to my journey and my journal. Aside from the fact that I find writing cathartic, one purpose for this blog is to keep family and friends updated following my diagnosis with Stage IV oropharyngeal cancer in December 2015. An additional benefit is that some of the content may be a helpful resource for others dealing with head/neck cancer. Lastly, I hope that by sharing this experience freely, I can help create greater awareness for HPV and its link to six cancers with the hope that preteen vaccination rates improve. The blog posts are in reverse chronological order and go all the way back to November 2015.